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Neurodiversity

I didn’t even realise that my brain could be described as ‘Neurodiverse’ until almost a year ago. Even though I have always felt ‘different’ even as a child.

I have a Love-Hate relationship with my ‘rainbow brain’ as I like to refer to it! Sometimes I can be sailing along quite nicely, feel OK and confident and then BANG something goes wrong and the ‘red mist’ descends, and then I ‘explode’ like a volcano!

The reasons why I love my rainbow brain:

Because I have finally learnt to embrace my ‘differences,’ rather than being a ‘sheep’ and copying what others say or do, I had spent so long referring to myself as ‘the weird’ girl, but now I rather be myself than a clone of others, or how people ‘think’ I should be.

Because I have learnt to ‘find my tribe,’ I have support groups online to thank for this, belonging to a group of ‘Mums on the Spectrum,’ where you can write anything and lots of people will report, relate and advise.

Because I have the ability to ‘hyper-focus’ on particular topics or interests, and I find a lot of joy in this. I love photography, seeing patterns in the environment and I love my ability to focus on research and study and the buzz I get from learning. I love finding out facts and information, which is something that I have carried from my childhood.

Because I’m completely dedicated to my children, I never thought I could think about 2 other people more than thinking about myself, I learn through my children and they’ve taught me to adjust from self-thinking and self-being, although sometimes I still find it difficult to tap into sometimes. My rainbow brain has the ability to tap into 2 girls who also have ‘rainbow,’ or Neurodiverse brains. I feel things like they do and see things like they do, it is hard to get this across to some people but I am trying!

Because of my brilliant and long term memory – I see everything in pictures and memories will crop into my head with the ability to see that scenario or event as it happened, the colours, what people were wearing, etc. I can remember a lot of happy memories from when I was a child. I also visualise people’s faces.

The reasons why I hate my ‘rainbow brain.’

Because it allows me to ‘overthink’ I’d love to have the ability to ‘under-think’ (if that’s even a word!?!) I can have a conversation one day and still be worrying that I didn’t say something right 2 weeks later!

Because I find some people beyond confusing, I tend to respond well to people who are straightforward and tell me exactly how it is, people who are ‘woolly’ and don’t tell me things straight are confusing! People, including family members, have taken me off their Facebook friends list, I’d like to know why, if you don’t like me or I’ve done something to upset/annoy sometime I just wish they’d tell me straight, rather than just ignoring me and remaining ‘secretive,’ I like to know where I stand! If I know I can then deal with it and move on! Rather than just obsessing over it for weeks! Cue ‘obsessive personality!’

Because I have an obsessive nature and that I find it very difficult to ‘let things go,’ often obsessing for days, weeks, months, even years! If I feel ‘wronged’ about something I will go on and on about it! And this usually ends in me writing a long letter or email about how wronged I feel!

Because I HATE to be wrong! If I get ‘told off,’ or if someone doesn’t see things from my viewpoint I tend to argue my point and then shut down to avoid any sort of confrontation and then I get what I call ‘red mist,’ where I just feel angry and find it very difficult to calm down!

Because I don’t forget! Sometimes I wish I could wipe certain memories as they often come back in a ‘flash-back.’ I can remember the look on the faces of people who teased or bullied me when I was a child, I often focus on a negative feature that they had and wondered why they were teasing or bullying me when no one is perfect! Like the boy with the big, googly eyes, so big and starey that they could take over his whole head, the girl who told me I was ‘fat’ and needed a bra when I was 11, yet a tin of ‘Slim Fast’ fell out of her bag, and the boy who everyone seemed to love, yet had these big flarey nostrils that could almost breathe fire! I wonder if these people grew up to be the same, making themselves feel better through making someone else so unhappy?

Because I find it hard to start a task and then find it impossible to stop doing it! Sometimes I will put something off and procrastinate but when I eventually get around to doing it, then find it difficult to leave the task unfinished! I often am up past 12am as I am a night thinker, however not so great when your children get up at 5am!

Because my brain can make me so paranoid, my brain has needed Cognitive Behaviour Therapy (currently on a waiting list for more,) counselling and life coaching. Sometimes life is hard and tasks and events that ‘Neurotypical’ people may find not so catastrophic, I find incredibly difficult. This is why I do look back and sometimes wonder how I’ve just been ‘allowed’ to go on and make many mistakes as I’m such a poor judgement maker and often feel judged for making the wrong decision, yet nobody actually guides me and steers me the ‘right’ way. ﻿

However difficult things can be sometimes, I cannot change my rainbow brain, I just have to embrace it and use it to its best abilities and just try and learn coping mechanisms for those negative aspects.

After researching I found that the terms ‘Neurotypical’ and ‘Neurodiverse’ originated in the 1990s, but somehow, like other things had passed me by!

These terms are often referred to when people are talking about Autism, or Autism Spectrum Disorders (ASD) or as some like to refer: Autistic Spectrum Conditions (ASC.) However the terms also refer to:

“ADHD/ADD, dyslexia, bipolarity and other neurotypes as a natural human variation.”

I therefore decided to create the ‘Celebrate Neurodiversity’ logo using the Neurodiversity infinity symbol. I am happy that this symbol displays rainbow colours, as it represents the spectrum of ASD and diversity, as I definitely know that no people with Autism are the same. And we are also big fans of rainbows in our house, and what they represent – after the rain, there is sun and then a rainbow 🙂 It celebrates the positives of our diversity, what some people may view as a tragedy, I see as a celebration of:

A “neurological diversity as inherently pathological, instead asserting that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.”

“view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.”

I don’t agree that Autism is ’caused’ by vaccines, or bad parenting, I do not believe that my daughter will “grow out of it” and I know this because at 34 I’ve never grown out of it, just learned how to cope and how to accept myself for who I am. I also don’t believe that being an “anxious mum,” makes any difference! My anxiety is only made worse by people who don’t believe what I am trying to get across!

A fellow SEND blogger wrote a post for the Firefly Community about all of the things that parents have been told about their children, it’s very opening and I can relate to many of them, sadly.

“The “acceptance perspective” endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.[13]Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated.[13][15] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.”

We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives 🙂

Lou (5):

I have noticed her sensory seeking since the age of 18 months, she has SPD (Sensory Processing Disorder) and Hypermobility, and currently being assessed under the ‘Umbrella Pathway’ which is the ASD assessment for the area where we live. Lou also displays traits of ADHD and PDA (Pathological Demand Avoidance,) although I do wonder if the ADHD traits we see are all part of her SPD Sensory seeking, but her Paediatrician has said that they will assess her for ADHD when she is 6, so a year to wait! I have no idea how long the ASD assessment process will take, someone told me approximately 2 years! But we shall see! It is more difficult in Lou’s case as she ‘masks’ her difficulties at school, bottles up her frustrations and sensory overloads all day, and then ‘explodes’ like a shaken up bottle of pop once she reaches home. I am hearing more examples of how Lou is struggling more now the pressure has upped in her first year at school, she thrives on routine, but likes to do things on her own terms, so the free-flow system that Early Years classrooms allow, do suit her best. I do wonder how she will cope with the challenges of a year 1 classroom and SATS eventually! Lou is showing more anxieties now, she requires ‘fiddle toys’ to concentrate, and she’s been picking at her nails which require medical treatment.

Lou has had genetic bloods taken and in August 2016, we were told that she has a genetic anomaly of “unknown significance.” In October 2016 both myself and Lou’s daddy also had genetic bloods to check if this anomaly is genetic or unique to Lou, the bloods were sent away to Birmingham and we’re still waiting for the results.

Lou is funny, she likes to make people laugh, she is fantastic with numbers and her writing is coming along, she is the master of ‘messy play’ and sensory seeking! Her memory is fantastic and loves learning facts, her current favourite TV programme is called ‘Do you know’ (CBeebies) where children can find out about how things are made and how things work. She has a huge special interest in ‘Shopkins’ and the ‘Trolls’ from the movie.

Moo (2)

Moo is still so young, I’ve been noticing some sensory issues and seeking with her for a few months now but I’ve been worried about sharing them as I had such a negative experience with Lou, in terms of my parenting skills being blamed for her difficulties. However, I’ve now contacted the same health professional that knows all about Lou’s history as I am aware that the earlier the support is put into place the better.

Lou went to our local hospital’s children’s clinic this week and it was found that she is hyper mobile just like her sister. We have been noticing since she starting walking at 15 months, that she walks with a slight bend to her legs and her left foot turns in and she is tripping over frequently. She has now been referred to Orthotics.

Moo is already such an oral seeker, she wants to chew on items constantly, she gets very distressed when she cannot have access to something to chew, she will put items such as mud, sand, stones, crayons, and Play Dough into her mouth to chew on. We have to ensure that Lou’s Lego and beloved ‘Shopkins’ are put out of reach! She also likes to wear her coat and often hat indoors for hours, she thrives on constant contact, especially to me – which is the opposite to her sister! One of the most recent signs I’ve noticed is that Moo will place her hands over her ears when the hairdryer or Hoover are turned on and we recently went to the supermarket and she heard a high pitch beeping sound and got distressed and held her hands over her ears also. If her older sister is screaming, Moo will shake and literally climbs up my leg for comfort.

Moo is also naturally funny, she is very loving and thrives on cuddles, she will place my hand onto her tummy to squeeze her for comfort, her speech is coming on a treat and we adore her curly red hair! She definitely is a girl who knows what she wants! Moo loves ‘Bing’ Bunny from CBeebies, Teletubbies and is a huge fan of ‘Mr Tumble,’ she is now using a few Makaton signs from watching.

Mummy:

Mummy (34) is the one who sat in a talk on Autism in September 2016 and thought “that’s me!” I used to feel ashamed of my differences, I always knew I wasn’t the same as most people around me, but I never quite knew why! I would describe myself now as ‘quirky’ but for most of my childhood and teenage years, thought myself weird and strange. I have masked my difficulties for my whole life and suddenly thought “I’m exhausted, I can’t do this anymore” so I went to my GP and now I have my Adult Assessment for Asperger’s in April 2017. I’ve been given so many different labels over the years so having a diagnosis would finally give me the release of all those questions over all those years!

My biggest struggle at the moment is socially, I go through patches where I thrive and organise and arrange so much as I feel able to, then after as the pressure ups, or if I take on too much, I then withdraw and find it hard to cope in social situations and worry that people will find me odd and strange. I still have ‘sensory overloads’ especially in public and have to hold it all in in fear of embarrassment, if supermarkets are busy, loud and lights are bright and I feel closed in, I will forget what I’m in there for and head for the nearest exit! I am also still claustrophobic, if I can’t see a clear entrance or exit in a building I will panic, especially if someone is blocking my path and talking at me! Sensory overloads result in what look like ‘panic attacks’ for me these days and I usually save them up until I get home and explode! Just like Lou!

For Autism Awareness The National Autistic Society have realised the following video: Make it Stop

It is such a good insight into how you feel if you are experiencing a sensory overload.

Self confidence I’ve always struggled with so it’s difficult for me to explain what I’m good at! But here goes! I thrive on craft and art work, I love to express myself through creativity and writing, I can’t always express my feelings out loud but I can write it all down! I love my children and before they were born I struggled to understand how to have empathy for others, they have taught me so much ! I love being around children, I’ve always identified with children who have additional needs as I now have trained myself to think about how they may be feeling, especially if they have sensory issues, e.g if I see a child is distressed and cannot see why I will always think beyond and ask “is a label scratching you?” Some people may describe my methods as too empathic as I’ve heard so many times “your too soft” or “your wrapping them up in cotton wool,” but I challenge these people to put themselves in my head and see what I see and feel what I feel in terms of sensory issues, it has a huge effect on daily functioning! I do not see children as ‘naughty’ I’ve always identified that all behaviour has a reason and you just need to think ‘out of the box’ and not try to force children to conform! I know that not everyone will agree with me and I often clash with people! I like to help other people, something that I’ve also taught myself over time and enjoy doing 🙂

Daddy:

Daddy was educated in a SEN school in Somerset, in today’s terms (not the awful 1980s,) he would have been described as having GDD (Global Developmental Delay,) Learning Difficulties and severe Dyslexia. He was seen by many professionals and also had to wear supports for walking until past the age of 5. Professionals believed that he would never be able to lead an independent life, but he has been able to secure employment and now has a family of his own.

Daddy teaches the girls all the practical stuff, it takes Mummy hours to put together a flat pack bread bin ! Daddy is the practical thinker, yet mummy looks too much behind the theory of stuff! Lou loves rough and tumble play so daddy is the best for this! Mummy hates it! Daddy makes us laugh so much!

Not everyone understands our Neurodiverse family, I’m not unaware that people talk about us and comment on us, people may even joke about us 😦

But we have to just concentrate on the 4 of us and try to block out any negative views or negativity, we are very lucky to have some lovely, supportive friends and family 🙂

We are trying out absolute best, we can’t do anymore than that ~ everybody deserves to be happy !

Thanks for reading 🙂

Click image to go to the Family Fund Website

I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :